- Posted June 17, 2013 by
This iReport is part of an assignment:
Confessions from imperfect parents
If They Had A Voice
'One Saturday morning when Marley was about six months old I got up and told my wife I was going on a walk,' he said. 'When I left our apartment, I had no intention of coming back. I could not do it anymore and I was going to leave my wife and daughter.' And then he got in contact with a man from India who had e-mailed him. 'We laughed, cried, and argued for two hours for two hours over Skype. I cannot explain it, but after talking to him for two hours I had the strength to go home and face another day. I started calling people all over the world for an entire year. I would start my morning talking to a family with a Down syndrome child then head off to work. These conversations would give me the strength to get through another day. Not once, did a family tell me they did not have time to talk to me. Every family I talked to gave me an honest insight into their experiences of raising a child with Down syndrome. '
He says he and his wife, Jana, want families to know they are not alone.
'The families are out there, and there are numerous organizations willing to connect you with families,' he said. 'Every family I talked with told me that having a child with DS had opened their eves to a love they would have never experienced without that child.'
He recalls a haunting note he wrote to himself when Marley was 2 months old, and reflects on the peace he's found: 'As I slowly crawl out of bed, the only comfort I can find is kneeling to pray and asking God to take my worthless life in exchange for removing Marley’s extra chromosome.'
A version of Barr's story appeared on CNN.com.
- nsaidi, CNN iReport producer
During college, Jana and I met at Sevier Heights Baptist Church in Knoxville, TN. From the very beginning Jana told me that she wanted a man that truly followed God, and to teach overseas. When she told me that, I didn’t really consider what she said, because she was so BEAUTIFUL, and I would have done anything to get a date with her. So after a year of dating, we got married, and finished our graduate degrees before heading to Bangkok, Thailand.
Our first five years teaching at ICS (www.icsbangkok.com) was a very smooth transition for us as a couple. We worked together ministering to the students we both taught and coached. All of that changed on March 19th when our daughter Marley was born.
The day Marley was born, I went straight to the nursery and held her for well over two hours. I just held her and cried because I had never experienced such a love for anyone or anything in my life. I think the Thai nurses thought I was crazy because eventually they told me I needed to go be with my wife. Three days later, before we left the hospital, the Pediatric Doctor told us she thought Marley might have Down syndrome.
My reaction: Are you freaking kidding me? I immediately had a panic attack and they took me down to the ER. Thoughts were racing through my mind: How could my perfect daughter have Down syndrome? How could they not know for sure? How could the general ultra sound- that said we had a one in eighteen thousand chance of having a child with DS- be wrong? Why was God punishing me? How could I live with a daughter that was going to be rejected by everyone… including myself?
I entered into a deep depression for the first year of Marley’s life. My wife was so concerned about me that I started taking anti-depressants and seeing a counselor. I contemplated leaving my wife, or giving my daughter up for adoption, and suicide. I would lie awake at night thinking about my future, and searching for a reason to live. I believed everything negatively the world told me about Down syndrome, and viewed it as a curse on my family. The entire time I worried about how this would change my life! That is when I realized that my relationship with God was not where it needed to be, despite the fact that I had gone to a Christian University, been ordained in a Christian Church, and moved overseas to teach at a Christian school.
Years ago, before my father died or Marley was born, my father told me,
“ If you wanted to fix a problem, then do something about it”.
That is what I did. First I stared reading through Psalms to find comfort in the Scriptures. Next I started researching and calling every family I could find that had a child with Down syndrome. I owe a great deal to these families because they were willing to talk to me despite the 12-hour time difference between Bangkok and EST. I also started forcing myself to interact with my daughter. She was desperate for me to start loving her, and continued loving me until I broke down and did the same. And finally, I talked to God. I talked to Him just like He was sitting in a chair beside me. I was open and honest about the entire process, and then I began finding peace.
Healing is a process, a journey, and that is what prompted me to make this video. I would have never experienced this life changing transformation if Marley had not been born. It is true, there are difficult times having a daughter with Down syndrome. But it also true, that she is very much like any other child. Marley smiles, laughs, plays, is able to meet many developmental milestones (albeit her own pace, with her own style), makes mistakes, and most importantly- completes our family. She literally brightens my day every time I see her.
The “Medical Community” focuses on so many of the challenges associated with Down syndrome, that we developed this unnecessary fear -just because it is different. The truth is I am a better person today because of my daughter, my daughter that has Down syndrome. I am thankful for a wife that was willing to push me to change, and support me when I struggled. Mostly I thank God for Marley. I remember praying while waiting those first two weeks to get her confirmed diagnosis, “God if you heal my daughter, then I will give up my own salvation”. God didn’t need my salvation- that was a gift from Him to me, just like Marley is a gift to us.
The reality is that I am still saddened that Marley has Down syndrome, but I am beginning to realize that God can bless us regardless of our circumstances. I will never be able to fully understand why Marley has Down syndrome, but I do know she has made a difference in my life, my wife’s life, and in the lives of so many in our community.